30 January 2014

I feel guilty for not blogging. Truth is, life gets in the way. I've got a few ideas in draft form, but I need to dedicate proper time to write.

It's been an eventful couple of weeks!

My boy bought me a ring, telling me he wants to be with me forever. Every day I thank the stars for bringing us together. We are going well.

I've been settling into my new (dream) job which I am loving. I think the sign of fitting in well is when colleagues are comfortable enough to poke fun at you. And they sure did when I told them about this happening...

Cannot even deal!

I spoke at Quippings - a disability performance event on Saturday night - reading my previous two blog posts aloud. I love these events - they're inclusive (duh), encouraging, a little bit naughty (they're held at a sex bookshop) and I've made some wonderful friends. The performances are always amazing - some comedy, poetry, singing, and straight out reading - every one of the performances are moving.

Australia Day was spent at my boy's parents' for lunch, then we saw The Book Thief (how wonderful is that film?!) followed by an impromptu barbie with my neighbours, drinking and singing along to the Hottest 100. Here's the dog. 'Straya.

Monday was spent planning my trip. It's less than two months 'til departure and I needed to get my shit together. I've got most of my accommodation done now - just need to book New York, Paris, Brussels and London. Staying at a mixture of hostels, hotels, AirBNB and friends/relatives. Bring it. Just got to navigate the special needs departments of three airlines now. It's proving to be difficult and I wish I had a more common medical condition.

I also had a shoot and interview for a TV show - more on that when I know when it will be aired. My friends are so lovely - answering my call for extras in a social scene. Here we are, taking selfes for the camera.

After the interview, I received a phone call from England, telling me my application for The Guardian's diversity writer's workshop was successful. I am so honoured to be chosen, and I cannot wait for the workshop mid-February. What an opportunity. Yay!

When I return from my trip I will be doing a range of speaking engagements including hosting a couple of Write-ability writing and advocacy workshops for Writers Victoria and Arts Access Victoria. It's free and if you are interested in writing and advocacy and residen in or can make it to Melbourne, I'd love you to attend! Please come - but before that, send me some points you'd like me to cover.

22 January 2014

Yesterday morning on Twitter I came across the #abledpeoplesay meme. There were statements highlighting the ignorance around both physicial disabilities, invisible illness and depression. And I took part straight away, sharing the funny, stupid and insulting things people have said about my skin. Some of these things have been said to me years ago, others more recently. They're the sort of things that just stick, they made me laugh, and I remember them. It wasn't about me being bitter or not letting go. It was about me reflecting on and sharing the reality of how insensitive people can be.

Tweeting these was both humourous and cathartic. And it showed me and the Twittersphere just how intrusive able-bodied people can be towards people with disabilities.

Here are some of the actual things that able-bodied people have said to me. The. Actual. Things.

"Don't you wish there was a cure so you'd look a little less...unfortunate?" (Said via an email from an online dating suitor. He didn't get a date.)

"I wasn't sure how comfortable you were with being in a photograph."

"It's easy for you to criticise a diversity conference that lacked diverse speakers. You need to see the bigger picture."

"I don't understand why you only want to discuss your illness on your own terms. Strangers should be able to ask you questions."

"Change your appearance so you can be a little kinder on yourself."

"But dating is just as hard for a 'normal' person too."

"Here's the number of my naturopath."

"You look like that EVERY day?"

"You didn't tell me you were going to be THAT red!" (Said on a date.)

"Quick! Turn on the TV! There's a reality show featuring your condition."

"Is it contagious?"

"Stop scratching. The sound is really annoying me."

"There's always someone worse than you."

"God only gives challenges to those who are strong enough to handle them."

"When I first met you I was a bit shocked but now I realise you're normal and that."

"You've been a silly girl, letting yourself get so sunburnt." (Complete with waggling fingers.)

"What a shame."

"Will your children turn out like you?"

"There's no need to talk about sex around you. You'll never have sex" (Said at high school.)

"But you're not disabled like them."

"He/she must be very strong to be your partner." (This hasn't been said to be but to friends of mine.)

"Retard isn't an offensive word. I'm not talking about disabled people when I say it"

"My kids aren't scared of how you look, they're just shy." (This one makes me sad when I see kids covering their eyes in fear.)

"Oh but people are afraid of difference. They don't know how to react when they see you."

When it's all laid out bare like that I feel pretty proud to be so resilient. But I can't believe that people just say what they're thinking. Would they say those things to people without disabilities? My Twitter friends were disgusted and apologetic about what I tweeted.

I must qualify though: along with these things that have been said to me over the years, there have been so many more wonderful things said. Able-bodied people aren't all like those who have dropped these clangers. And people with disabilities have also said some pretty gobsmacking things to me too.

The things able-bodied people say show the attitudinal barriers that people with disabilities face. There is a gross sense of entitlement for strangers to know what's 'wrong' or to offer a platitude, because they really don't know what to say to someone with a disability. Education like this meme is a start in creating change.

A person tweeted me asking what's a good thing to say? I've written these two pieces that may be useful:

14 January 2014

Since starting this relationship, I've had to see Ichthyosis, chronic illness and visible difference in layman's terms. From the perspective of someone who has been raised with good values and has a polite demeanour, yet never encountered such visible difference or chronic illness.

When we first started talking online, he told me he was hesitant about getting to know me because of how I looked. Perhaps I overreacted, but this did sadden me, to the point that I wrote a blog post about it - or the wider issue of not wanting to be a heroic choice out of pity. Fortunately, even after reading my words, he still wanted to meet me. And lucky for that. I'm so glad I gave him a chance and not let my perhaps unfair expectation of everyone needing to be knowledgable about visible difference and how to react cloud my judgement (of course, I still expect politeness from people when they first talk to someone who looks different...). I've had to lower my expectations. Not in a bad way. Until he met me, he knew nothing about ichthyosis or appearance diversity - I have to be reasonable about this. I can't expect him to fully understand everything yet. I keep reminding myself that not everyone I meet has had an education or experience of visible difference, and why should I expect them to?

But I commend him. He's doing an amazing job with such a high maintenance girlfriend. He asks a lot of questions, is never rude and very patient. And he's so gentle with me. He wants to spend every moment with me, Ichthyosis and all. I ask him often, "are we real?". He pinches me gently and says yes, we are.

One thing that I've noticed since being with him is that this skin condition is deceiving. While I look the same most days - and while my face looks relatively calm at the moment, there's the painful skin that is not so obvious. Oh the pain, there's been a few very sore weeks lately. While I say I'm sore, he might not have been able to see the difference, except perhaps in the way I walk or my need for rest. And at times I felt like he just didn't understand that I can't just bounce back from a day of regular activities. I need to lie down after a shower to calm the pain, I need to do nothing for a while, I'm not lazy. I didn't want to be seen as a burden on him.

I've had to explain that Ichthyosis isn't just about appearance but a physical chronic illness. My dermatology team has invited him to my next appointment so they can talk to him a little more about the medical side of Ichthyosis and also to give him hope. He's accepted this invitation keenly. The head derm, who has been seeing me since I was six, joked that while my Dad may have approved of my boyfriend, the dermatology team will need to, too.

My boy has observed and commented on the things I take for granted - which are reasonably and understandably freakish to someone who has never encountered Ichthyosis before. There's how hot I get. I forget unless I'm touching someone else, and that had been rare - so much skin hunger. I'm hot in two ways, he compliments me, then moves away to keep his own body cool. There's the need to be careful with what's on his skin. Chemicals and chilli are to be washed off before he comes near me. He's not kissing me after eating the hottest chilli sauce on the menu. (He's a man that likes his chilli dares...). I also eat a lot due to the rapid skin renewal, and this has been something that's surprised him in the first couple of weeks.

And there's my skin. I shed so much skin. Initially I would brush it off his clothes, embarrassed I'd leave my mark on him. I'd worry about the skin in my bed. I'd worry about my peeling face in the morning or how my skin would fall onto him. I'd worry about my cream and how oily it made his clothes. He's said countless times that it doesn't bother him. He finds my skin flakes in his pocket and smiles that he's carrying me with him wherever he goes.

These little things my skin does I take for granted amaze him. And his acceptance of them - the aspects of the condition that so many have found yucky - amazes me. I feel so, so lucky to have found him.

He holds my hand right, pulling me closer while we are waiting to cross the road, and steering me away from those who stare. I don't see them staring - I don't much anymore, but I know he's trying to stop me seeing. He looks back at those staring, angry for me. I see that. I don't want him to be angry and I hope that one day he can shake off those stares like I can.

It's an adjustment for both of us. This isn't just adjusting to space, music tastes or bad habits. It is an uncompromisable adjustment. It's adjusting to a medical reality that can often be severe, unpredictable and embarrassing for me. My Ichthyosis can be frustrating, upsetting and an inconvenience, and for so long, my skin's nuances have been private. But we're doing ok. I guess it's a unique challenge like every relationship has. I've said to him...

On the weekend we were laughing about something. I told him to "just be normal". And then I apologised. "Sorry, here I am telling you to be normal when I hate that term". And I joked again that I am not normal enough. He told me to stop using that word, because I hate it. He gets it.

He has a nickname for me - born while watching The Great British Bakeoff. It's Flakey Strudel. "I love you, my flakey strudel", he says. And I said that as long as we have each other we will alway have heat. Cue bursts of laughter.

And that's it. It's about being comfortable enough to have a big laugh about my situation. Our situation. Because that's how we will rise above that hard stuff.

These are some quick tips I've thought of to help your partner adjust to your chronic illness. Have you got any more?

10 January 2014

It took so long to reach the point where I didn't worry what others thought of me. I know who I am, am comfortable and confident with how I look and am actively educating people about what it's like to live with a visible difference and chronic illness.

But then Reddit happened. And I've been struggling a little. I can't pretend the Reddit experience didn't affect me. To have my picture analysed, diagnosed, ridiculed and threatened by hundreds of faceless people was hard. There's very little recourse with the administrators of the site, except to set the record straight myself. And then to have some similar comments be left on this blog hurt too. It stressed me, and now I'm skin-sore too, an unfortunate outcome of being stressed. My confidence has taken a beating.

As a blogger, I can't help wonder whether I brought this on myself?

Was it inevitable that one day I wouldn't be able to control my story and image - the very thing I have been doing through blogging?

I keep hearing the old "you put yourself out there, you gotta expect the criticism" line that is all too often thrown at writers - usually from people who don't write about themselves on the Internet.

Should I have ignored the link I saw in my blog stats to protect myself?

Did I inflame it by responding?

Is this what I eventually wanted - some sort of fame sparked by an Internet war?

Would writing yet another post about it be a perpetuation?

No to all of the above.

I didn't ask for hate speech. Looking different does not give people permission to spew their misinformed and offensive opinions about the appearance of a complete stranger on the Internet. Or in person. Those Redditors, they knew nothing about me. Even when they cut and pasted words I had written about my relationship onto their hate-filled forum, wrung them out and laughed at them, they still only managed to get to know me from two sentences. They judged me only on how they saw me, nothing more. They should be judged on their actions in the dungeon of the Internet. I wonder what they're teaching their children about diversity?

Hate speech is driven by a pack mob mentality. But so is kindness. So much so.

I have been following the incredible story of Lizzie Velasquez - a young woman with a visible difference. She was ridiculed by YouTube commenters, and though self advocacy, she took the power back. And on her Facebook page yesterday, she expressed her gratitude of getting 50,000 followers on YouTube, saying "I went from YouTube being the one site that crushed me to the one site that has helped turn my life around." Bravo Lizzie, you're one of my appearance activism heroes!

Lizzie's TedTalk inspired me to dip my toe back into the blogging water. Aside from being in holiday lazy mode/time consumed by being in love/uninspired to write here on my blog, I've been scared. What will they be saying about me today? I've woken up in the middle of the night a few times - scared of strangers' nasty words - the very thing I wasn't scared of when my picture was first misused. I want my blog to be my safe place again. I want people to be visiting because they want to read, not because some of them are seeking freak-show-esque entertainment - hate reading on steroids.

I think the readership is returning to normal. Hits are still high, considering I have not written much lately. People are reading because they want to, I guess. I have had so much support - the love from strangers (and friends, plus the media) is unfathomable. I still haven't got through replying to all the emails and Facebook messages sent - I'm sorry. I've had a few friends and social media colleagues write amazing posts in my defence - Arnebya, Friday, Jenni - and I ended up linked from A Mighty Girl and National Geographic too! A big thank you to everyone for showing support.

Over the Christmas holidays, we had a celebration for my Mum's birthday. I met M and S, some friends of my parents', for the first time. I've been in contact with them for about a year on social media because they've been interested in my writing. They've come to know a lot about me through my blog and also what my parents have told them. And so it made my day when I was given an artwork made by M - an upcycled frame containing scrabble pieces spelling 'I am not an animal', with a dedication 'the day Carly took on the Internet and won'.

I may not have taken on the Internet in such a big way. I'm not as brave as I thought. But I did make a small impact - one that matters to me. People from across the world have written to me, telling me they are now confident enough to accept their ichthyosis or visible difference through reading my story, or that my attitude and resilience gives their children hope to be confident and assertive. A reader wrote to me telling me my writing saved them from making the worst decision. Knowing that they're ok, just maybe because of my words, means so much.

My boy took that picture of me that's at the top of this post. He used it as his phone screen saver, which made me all shy. I'm still getting used to being the object of another's admiration. The vain side of me initially didn't like it - thinking it was too close up, that my forehead and teeth are giant and my lips are wine-stained. Then I realised that this picture is how someone who knows me and loves me sees me, which is more important than the way someone who doesn't know me and has bad intentions sees and speaks about me.

02 January 2014

We're two days into 2014 now. Do you say "two thousand and fourteen" or "twenty fourteen"? How was your New Year's Eve? What did you do?

Mine went a bit like this :

In the morning I was interviewed by Ita Buttrose!!! (And Jessica Rowe, Sarah Harris and Joe Hildebrand.)

Studio 10's producers emailed me last week inviting me to be on the show. I was a little apprehensive - truthfully, I am emotionally exhausted from the Reddit situation. But I wanted a chance to articulate my thoughts verbally, and I knew that Studio 10 is a new audience for me to reach and spread awareness about ichthyosis and visible difference. It was a way of telling my story in my own words and quashing the assumptions and ridicule.

So I got up early and headed to Channel 10's Melbourne studio where I did a live cross to the hosts in the Sydney studio. I wasn't nervous, but it was hard looking at the camera and not seeing the hosts, just hearing them in my earpiece. And I almost had an Anchorman situation with my green floral dress and the green screen, but fortunately the producers could do without and just have the newsroom in the background.

The hosts were so supportive and lovely, I am glad I did it. That morning I woke up and said to my boy that I was scared of what might be said about me on the Internet. He told me to only read the good things. And I checked Twitter to find lovely tweets from Sarah Harris, plus more nice words from my Twitter friends. People are so genuine on Twitter.

And the support on social media after the interview was so amazing too. As I said to the Studio 10 hosts, the positives to come from the Reddit drama is that the good people have outweighed the nasty ones, education and awareness about ichthyosis has increased so much, and many people with the condition have contacted me to say they're more confident about their skin because I've told my story. That's worth something big.

Studio 10 termed me as a sufferer of ichthyosis. A few of my friends have commented on this - knowing that I don't suffer. I live.

After the interview, I headed back to the city, not at all feeling like I'd just done a live interview on national TV (actually I was worried I'd trip over running for the train!) and met my friend Dane and his partner who were in Melbourne to celebrate New Year's Eve. I first met Dane in March last year (see this blog post) after knowing him through my day job for years. It was so good to see him in person again. I hear he had a very good New Year's Eve.

Then my boy and I went for lunch and a spot of shopping, and he surprised me with another bunch of red roses (he said because he thought I could do with some more. Awww!) (And check out the awesome work he did choosing my Christmas present - that bow necklace! Love!)

We spent New Year's Eve in - I dressed up and threw together an antipasto platter and then a paella - all fresh ingredients from the Vic Markets. Delicious.

Music was played, wine was drunk and while we hoped to see the city's fireworks, I was asleep by 11.00pm. Fortunately we took this selfie to remember the night by.

And how is it being back at work? I went back to my day job today, after almost two weeks off. I went with the optimism that my overseas trip is less than three months away. So close!

I'm pretty sore at the moment so I'm glad this work-week is a short one. Lots of rest needed.

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Copyright + disclaimer

The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.